Any advice for a new caregiver?

Best advice I was given is to understand that they don't always know what they are saying and don't take it personally. Give her plenty of hugs, you'll cherish that when she is gone.

Every case of ms is different. If you are an Angel if God and are wrapped in humility you might be the exception. But you will give up your life in the process if exacerbating illness such as my wife’s case.
First the spilt cups and dropping, balance deficiencies led to a distinguished cane—then walkers and rollators and then the blasted wheelchair. I knew my life was over when the wheelchair showed up. Now it’s dementia (irrational, argumentative, unreasonable) recognized now as cognition demise. Funny that she blocks her ears whenever I try to explain the current flows of options. Savings kaput as I stopped working to stay home as the Good Samaritan teaches but have gone crazily depressed. It’s just a small patch of grass that grows Un-mowed.
Work was always my driving force for learning and discovery.
While I have to go to work willingly (social security at 65 does not cut it) Mary must have attendance since she falls down at times if unaided (nightmares of that nature caused me to stop working). This crazy disease affects her in many ways and continues it’s ever so subtle creep. Working will keep me sane and help get her to a better place.
It takes on a life of its own— thought I could handle this on my own.
So chin to the wind
You must make decisions
Before you rescind
And deal with divisions

Make sure you get all the help you can get. Keep working if possible even from home.

Be well —-all the roads of advice point to taking care of yourself. I did not and now fighting back. It was only recently that I realized there is a concept called caregiver burnout. Dealt with this for 18 years on my own. Now working to recapture my will. Thy will be done?

Stating that the husband is selfish is NOT correct. Is your husband demanding that you both care for his grandmother? You seem to NOT imply that. Helping the family situation is what you need I believe. I agree that just recently getting married and taking care of grandmother will be a challenge. My question would be: why is your husband's father or mother not stepping up and making some changes in their lives since you have your youth and years ahead to do some planning and also plan for a family? Well, the toll is going to be an issue you need to consider very carefully in my estimation. God answers prayer and my additional advice is you both make that whole thing a REAL matter of prayer and God will help you. HE never has failed me yet. I am retired and my wife is living with dementia in the Assistance In Living, so I live alone but can see her often. I have good health, she is older than I.

You have a selfish husband

If you were scared to call 911---
And a baby--either you are devoting your life to Mammy--who as far as I can tell doesn't have enough short to memory to remember who you are when she wakes up in the morning--or you can raise a family. Manny is not going to getting better or easier. It is lovely that your husband is in this for 100% now.Trust me, you can't be sure it will last. She goes to bed at 8pm and sleeps through. For now. I don't wish this on anyone, but what if you have a premie? What if you have a child who need constant hospital visits? PT, OT, Speech? I was soooo much picker about what special needs I could accept in my second daughter than my first, because I knew how much time I could devote to a 2nd child. And for all my planning, it quickly went pear shaped.

I'd agree with many others. Don't do it. More important initially is for you to answer the question: Why do I want to do this? what is your motivation? Taking care of you, your relationship/marriage, and having a healthy quality of life is what is vitally important. Asking if you sound like a 'selfish brat' tells me that you may not think highly enough of YOURself now. Attaching these negative words to yourself now is a red flag to me. There is no such thing as a selfish brat. This is a characterization one would attach to a child, not a responsible, loving adult. If you are putting yourself down now, I question how well you will be able to create boundaries for self-care when you are depleted, need renewal, exhausted, and perhaps depressed and anxious. If I were you and REALLY felt compelled to do this work, I would start part time (5-10 hrs/week) and see how it goes. You need to keep YOU energized and healthy to care for an elder demanding so much and in decline.

OldBob is spot on accurate! Plus you've been going for 9 months?! Wow. OldBob, sending you deepest condolences on the loss of your dear wife. ((( ))).

It is inconceivable to me that you have been somehow put into this situation. It is beyond inconceivable that you would ask if you wonder if you are a spoiled brat....You are noble to a huge degree. You and hubs must find a way to lighten your load. I suggest a 36 hour break each week as a minimum.

I was caregiver of my wife for 12 years until July 2017....I am 81. She was my sweetheart...I got so tired that I eventually hired ladies to help..

Grace + Peace,

Bob

Contect your county social services and ask about a program where u can get an cna at your house ...my mom gets 6.30 per day of having her nurse.medicaid and medicare pays for it.and im also letting her go to adult care from 8 to 530 2 days a week ...i dont want get over loaded so im using all my resources .good luck i hope this helps

STEPHANITALLY; I'm sorry I never saw this post to reply !....You are a special person to take in such a task! GOOD LUCK! IT'S not easy! But it's rewarding ! Know in your heart it's the right thing  to do !..prayers to your family P.S.NO YOUR not selfish !!

It would be great if you could print these messages to show your husband, or if you're not comfortable with that print statistics for caregivers. The fact that you agreed to this in the first place tells me that you're a generous person. I'm sorry I promised to keep my parents out of a care facility. Now I feel stuck. If it's decent, they may enjoy that more than being at home. Many elderly people are fascinated with people watching. I'm 52, and the only thing I have to speak of & complain about is the nonsense that goes on here. Trust me. You don't want to be in that position in a new marriage. I'm sure your husband loves you very much. He likely has no experience with or knowledge of the demands of caregiving. It's always been difficult to ask for what I need. I see others set boundaries and ask for help with no negative consequences. Be honest with your husband and tell him your fears. Good luck to you and please drop back in to let us know how everything is going.

Consider hiring home health staff, trusted relatives and friends that may not have a job, to come into your home and take care of your relative while you continue to work and build your career. After all, you will need your finances to assist your husband in effort to lighten the financial burden that he may have to carry as the only working person in the household. There are a lot of home health agencies that have a loving and caring staff. You and your husband will just have to find the right one that would provide the best services for your relative. Remember, you will need care one day and you need to financially prepare for it now. So keep your job and stay connected to your peers, spend time with your husband as both of you prepare for another level of life while you are still young.

Say what?!?! Have a baby? Really? You'll then be taking care of 2 babies.

I can't imagine trying to rear a child who is slowly gaining new knowledge, skills, learning to talk, walk etc. and then turning around and watching the opposite happen with an elderly person. Sounds like a recipe for disaster. While I would never try to talk a person out of doing something good for someone, at the same time if you spread yourself out too thin, somewhere, something is going to give. So, be prepared to lose something in the process and do this with your eyes wide open.

I don't think Steph is being insincere. I see a lot of myself in her, how I felt when I first started caregiving. I was full of love for my grandmother. I would do anything for her, and I did... for a while.

As long as Steph realizes that when grandma's care becomes too much, then there must be help hired or other plans made to deal with it... Why not let Steph learn through experience? It's rather like describing colors to a blind person, isn't it? You can't know until you do it, and everyone's experience is different.

Steph, do what you want to do. If you end up with an anxiety disorder due to too much chaos & responsibility, that would be unfortunate. That's what you're gambling with. You're also gambling with not being able to tend to your infant/toddlers's needs due to the progressing of grandma's illness.  You may drive a wedge in your marriage due to resentment.  No talk now with your husband can predict what will come in the future.  Caregiving to a dementia charge is considered one of the most stressful things, and if you add a child to take care of, then you're officially a "sandwich" generation, except your child would be an infant, also requiring practically round-the-clock care. 

Stress studies are done on people that are in that position.  You can look that up online, see who is studied as being the most stressed in society.  It isn't police, etc., it's caregivers and specifically sandwich caregivers.   You should at least wait until 12 months into caregiving to see if you still think it's anything-but-nuts to bring an infant into the situation.  

I'm with you, Lindylu.

Whoa people, be constructive about what it is like in reality, not critical! I know a lot of us are stressed out caregivers with many years under our belt of the life changing decision of taking care of our elders/parents, and no, it isn't all a pleasure cruise. How many of us could possibly have envisioned what we were in for? I felt I owed my Mom for all she has done for me throughout my life and it was her request that I care for her. I could not say No. Now, this young lady does not know either and we have all poured our experiences and warnings out so she can make a decision with her eyes open wide but it is her choice.
Stephanie, this is going to be hard. You are young and taking on your husbands parent will not be easy especially if you are planning to start a family of your own. A child is an enormous responsibility but an adult child is much more difficult. They have grown up problems and if they become physically and or mentally incapacitated, lifting and moving them and handling simple daily things like shopping, preparing meals, taking to appointments, repeating the same thing over and over again, keeping them entertained safely is just a fraction of things that will be on your plate. I fear this would be overwhelming on a new Mom and most likely rob you of that joy by being overwhelmed caring for everyone and you will be last.
None of us know your stress capacity, what type of relationship you have with your inlaw, how supportive your husband is, etc. All of these things will matter now that you have chosen to take this on. I will add that I did not imagine that living with and caring for Mom with dementia would test my patience on a regular basis. I did not imagine that my career would be greatly affected. I did not imagine my brothers would paint me out to be a monster that did all of this for some kind of monetary compensation and I did not imagine I would become a prisoner that cannot go on any vacations. Yes, I may sound bitter but in the end, I know that I did not just stick her in a home where she could spend the rest of her days in "Death's waiting room" which is what a lot of those facilities feel like. I know that well as my Mom worked as an RN in those facilities her whole life and I always hated going in there. They we just so d*mn depressing! I don't envy your position but do realize the possible pitfalls this could have on your relationship, career, and possibly your sanity. LOL!!!!! Maybe you are one of those angels that can manage and take it all in stride but I realize I am all too human and have many days where I am ready to jump off a cliff! I thankfully decided against having kids or I would surely be certifiable by now.
I hope your husband is a super supportive and empathetic man because that will be what will make or break this endeavor. Best wishes and be sure to take care of you.

Does anyone else think Stephanitely is pulling our leg?

Otherwise she might be the 1 in 1000 caregiver who loves cleaning up diarrhea and dealing with EMTs. As my Bostonian neighbor used to say, "God love ya", Steph, either way.

I've had to type and delete my response so many times, my keyboard is about to burst into flames.

The best thing I can say here is:
You are an adult. You make and are responsible for your own choices.

Good luck.

Completely crazy? Possibly. Naive about having and taking care of a baby? Yes!!!!!!!!!!!!!!!!!!! Also, you don't know how long it is going to take to get pregnant. However, I can tell you from experience that the birth of the first child changes the marriage until that child leaves home and you have an empty next. Studies have shown that marital happiness goes down when children are born and goes up with they leave home!

Also, for the first year you can forget getting a whole night's sleep for you will be up and down with the baby cause your husband will need his sleep to work at his high paying job. Try being up and down all night with a baby and then take care of a 91 year old with dementia? A formula for stressing out big time!

Add to this having an elderly woman with dementia in the house and you have the recipe for everyone, including the baby, being stressed out.
Babies are demanding and totally dependent. Raising a child to some degree makes keeping the marriage alive more difficult for the child always needs something, or at least that seems to be true quite often. It takes more work for a marriage while raising a child than it does when the nest stays empty or becomes empty.

Yes agreed - completely crazy. You are not thinking of the child's welfare in a home with an elder getting progressively sicker with dementia. No one in their right mind would recommend bringing a child into that environment. Just because you have survived one bout of diarrhea does not prove anything. Read up about the phases of Alz. Those who suffer from it can become violent. Mammy will not stay as she is - she WILL get worse.

Yes. Completely crazy.

Hi everyone, I'm still here! Lol. Sorry I've been MIA for a while. Things have been going really well lately. A lot of those posts saying "turn back now" and "your marriage will suffer" have really made me do some thinking. I had a long discussion with my husband about me eventually feeling resentful toward him bc he gets to do whatever he wants when he wants, but it won't be like that. We are sharing our duties as caretaker and we will be working as a team- easier said than done, I know things won't be easy all the time. We will be paid for caregiving, we have an elder lawyer and all the legalities worked out. The first week we moved in with Mammy (that's what we call her lol) she had a serious bout of diarrhea and she actually suggested I call an ambulance. It was scary indeed, but I kept my cool and had to call 911 for the first time in my life! We had mammy on a low fiber diet because she had traces of Colitis found in her stool.. I was sure to Clorox everything in the house. It's about a month later and she's doing well, and so am I! Every morning she asks what I'm doing there and I just smile at her and let her know I'm the one who will keep her company from now on and that we moved in! She's happy that "strangers" aka visiting nurses don't have to come anymore. I put my notice in at work and I've decided that being home with mammy is the best thing I could do- my current job was silly, minimum wage at a furniture retailer scheduling deliveries in the office. I'll miss spending my days with people my own age, but that's not a huge deal. I'm excited I can provide the care and attention she deserves. Husband makes the big bucks during the day and comes home to relieve me for a couple hours. Mammy goes to bed at 8 and we have the night to ourselves which is quite nice. The next thing I want to do is have a baby now, since I'm home and all. Crazy??

Just keep in mind you are joining his world not the other way around. Find out about his child hood. When his values were programmed. About his family and life history to better relate to his comments. God bless you bunches for taking this on. In caring for my wife of 17 years and she doesn't have a clue who I am other than the good guy that is nice or the bad guy that says no we will do that tomorrow. Be aware of mood changes and try to find the cause. Keep in mind its not about you or caused by you and its not him. Its the illness. Gods blessings to you. : ))

Another fly-by, cmagnum. I wish her luck.

This thread is 13 days old. Where is Stephanitely86? We have not heard back from her for several days. She must have continued on with the direction she had already chosen.

Yes, caring for another person in the capacity as we do as a caregiver can be stressful and there are some days when we just don't think we can go on. But I read some things like, 'none of it is pretty' and 'it will ruin your life' and those things are just not true. It can be as bad as you want to make it and I understand that we do have a tendency to become bitter about our situations and could see ourselves putting ourselves in your place as an avenue of escape like watching a movie about a person that runs away. However, as hard as it gets, it is not all bad. Caring for another is, or at least should be an act of love. There will be good times that you will be able to carry with you when it is over. But only if you keep the right attitude. If you want to be bitter about it you will have plenty of memories of the hard times. But I advise you to try and store up memories of the good times. You will be closer to her than anyone else and you will develop a bond that the other family members don't have. Build on that and store those memories away.

Having said that, do try and get other family members to help and do find time to get away from time to time. Sometimes we have to set our supercaretaker capes aside and do something just for ourselves. I don't know your whole situation or why closer, biological members of the family are not doing it, but it is what it is. Hospice nurses are not biological members either, but they care. Yes they are being paid for it, but the money has nothing to do with the care they give. Otherwise they could have picked another profession.

I don't know what state you live in or the laws there, but you may not have to be looked at later as leaving the job market. Is there any way you can have the state pay you for your care? You might have to take a couple classes or something, but then at least you could help your GIL and still be in the job market.

Try to remember that it can be hard not to become bitter sometimes, but we don't have to be if we don't allow it to happen. Look at the love and the caring that has to be involved here. When you look at that person who needs care, remember that you will be old one day and you may need care at some point. Treat that person as you would like to have someone treat you. They are still a person inside there and deserve the love God meant for them to receive.

Check out the 'tips for newbies - can we reach 100?' site on this forum - read all from beginning - lots of practical, time saving ideas

I answered before but think I missed the mark regarding a share in the security your husband may be acquiring through his work or promises from his grandma and the loses quitting your job might have on a 401K program or savings from earnings. If you stay married for 10 years or more, when you reach retirement age you can collect social security on either your or your husbands social security, even if you divorce after 10 years. Make sure you know how much your husband earns, does his employer have a retirement savings plan? Have you and your husband talked about this? Do you have goals? Look on the internet how newly weds make budgets. If you are giving up your income is your husband willing to provide you with basic needs? an allowance? Do you keep the check book or does he? If he isn't sharing with you, make sure you speak up. Agencies can charge $20 to $25.00 dollars per hour and individuals may be willing to work directly for a family for $12.50 to $15.00 per hour. Advocate for yourself. Make sure you are building a good future with your husband where you both have security when you are older. Time passes very fast. Blessings.

Sendhelp: Spot on accurate!